True Stories

I found out about my HIV status when I was 11. I was at the hospital with my sister, who has HIV as well. She went in to see the nurse first and came out with tears rolling down her cheeks and her face in her hands. We’d always had hospital check-ups and medication, so I didn’t understand why she was so upset. I thought it was just going to be a normal check up and they’d show me the files that I never understood. But there were no files, the nurse just said, “Sam, we need to talk to you. The reason why you come here, the reason why you take your medication, is because you have HIV.”

My first thought was that I was going to die. When I was in primary school you heard that if you’d got HIV it was because you were gay, and you were going to die. I wondered how long I’d got to live, but I didn’t want to ask because it would feel too real. The nurse broke it down and told me I wasn’t going to die, and I would be OK with the medication. She was trying to comfort me, but I didn’t feel like being comforted.

Life change

In the days after, I felt I needed a life change. I thought HIV was very dangerous and whoever has it and doesn’t know about it could get seriously ill. I felt like I wasn’t a kid anymore, and that I needed to grow up. I was scared about accidentally cutting myself, so I started acting differently at school. I had been very smart and polite, but I just curled up into a ball and became really closed off. I wouldn’t play about in class and throughout secondary school I was really stiff. I could still have a laugh, but always felt like I had to have some self control. I’m really comfortable now and looking back I just think ‘geez, I could have let myself go a little bit sometimes’. I really regret that.

I decided not to tell my friends. I remember being in Year 6 and hearing people talk about Elton John being gay. A boy I knew said: “He’s probably going to get HIV, that’s disgusting.” From then on I decided not to tell anyone as I thought they wouldn’t understand.

My sister told her friends about her status and it was really surprising because one friend stayed close, but the friend she was closest to drew back completely. She was probably scared. She wasn’t a bad person; she just needed to be told a little bit more about HIV.

At one point I wanted to tell people. My sister said: “It’s entirely up to you; if you don’t want to do it then you don’t have to.” I felt like if I was able to tell someone, just one person, it would boost my confidence. But I don’t know if my friends understand HIV because we never really talk about it.

Carrying on

My nurse told me about Teen Spirit and I started going a year after I was told about my HIV status. I was at a point in my life where I had really low confidence because I didn’t know how to take the news of my status, but everyone was really welcoming. Teen spirit is unique because there are loads of different projects. It’s about being positive about being ‘positive’. I remember being really quiet at first because there were a lot of big speakers. I thought, ‘wow, this lot have got so much to say, they must think having HIV is nothing, there’s obviously something’s wrong with me’. Some people weren’t fazed by having HIV at all, they carried on regardless. It just depends on your personality.

Medication differs from person to person, but I haven’t taken any since my GCSEs. My medication used to be refrigerated and come in a bottle. It was tricky, sometimes friends would ask me to go out, but it would get too late and I’d worry about missing my medication. It’s not like I wouldn’t go out at all, but I’d be restricted by always looking at the time. Then a few years ago I started taking pills, which made it easier. They’re in this little box that you can carry around, so it’s more discreet. If it rattles I just fill it up with tissues.

Moving forward

I’m going to be 18 soon and I feel much more confident now. But when I think about disclosing my status to friends I’m still not sure. I have thought about it, but I feel like it would be a burden if I told someone, and I’d hate that. It’s too heavy for anyone else to handle – they don’t need it. Who knows if I’ll tell anyone in the future, I hope I will.

Right now I’m only looking as far ahead as uni. I’m not too sure where I want to go, but I want to do something around graphics and design. I don’t think having HIV is going to stop me from achieving anything; it’s just the stupid stigma around it that affects other people’s perception. That’s the only downfall about having HIV.

*name changed to protect identity

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